August 18, 2021 Shields Trade Relations Team

Providing Care For The Rarest of Diseases

This blog was authored by the following members of our trade relations team: Kerry Mello-Parker, Director of Clinical Compliance, MJ Kelly, Medical Billing Specialist, Ben May, Director of Drug Trend and Pipeline & Stacy Walton SVP of Trade Relations. 

Whether a common or rare disease, our Shields care model always focuses on the patient. In honor of August being Spinal Muscular Atrophy (SMA) Awareness month, we want to highlight how our Shields care model helps all patients, especially those with the rarest of disorders, and talk a little about the amazing advancements being made within the rare disease space.

How the Shields Care model supports Rare Diseases

Our care model is built around putting the patient first. We provide high-touch service for patients with rare diseases and complex conditions. Our vast growing network of health-system owned specialty pharmacy partners provides an innovative approach to specialty pharmacy at scale. By enabling direct provider engagement coupled with the ability to leverage a fully integrated platform, we can follow a patient’s journey throughout the continuum of care.

“Many traditional pharmacies are not equipped, trained, or prepared to manage rare disease programs as they require complex infrastructure, specialized knowledge, and more intense patient monitoring. Therefore, specialty pharmacies must navigate a complex web of programs and services while collaborating with internal and external teams. By administering specialty pharmacy programs targeted at rare diseases, we can expand our reach to the most critical and vulnerable patient populations who otherwise face limited options from the traditional pharmacy model.” – Kerry Mello-Parker. PharmD, Shields Health Solutions

By combining our clinical expertise and compassion, Shields clinical pharmacists and nurses provide individualized care plans to maximize the patients’ clinical outcomes, improve their medication adherence, prevent premature treatment discontinuations, and reducing therapy complications. Through regular telephonic outreaches, our clinical team onboards patients before therapy and perform ongoing clinical assessments and consultations which, working collaboratively with care teams, address treatment adherence, side effect management, and risk-based stratification. As patient advocates, Shields clinicians take a holistic approach to care, addressing associated medical conditions and providing patients with the disease and product-specific resources.

The patient experience

Our concierge service liaison model augments the traditional specialty care model by providing a direct point of contact for patients, facilitating timely medication refills and seamless delivery coordination. Positioned in specialty clinics, pharmacy liaisons expedite time to therapy through swift execution of insurance approvals, prior authorization support, and assist in reducing the patient out-of-pocket financial impact to achieve the lowest possible copay for some of the most expensive therapies.

“To have the opportunity to serve patients in the rare disease community is a privilege. As our nurse team interacts with patients and families, we recognize that they may feel isolated due to their rare illness. We strive to demonstrate that our healthcare team truly cares and is here to support them. Our goal is to make each interaction personal and encouraging. Kindness connects us, as we walk each individual through their prescribed specialty therapy.” -Laurel Roberts, RN, Shields Health Solutions

When a patient receives their diagnosis, the emotions and challenges are often amplified with the additional stress of navigating through the maze of insurance. Shields supports our partner’s patients and assist with all needed standards to obtain medications and procedures.

Advances within Rare Diseases

Over the years, there have been significant advances in developing medication used to treat patients with rare diseases. For example, Spinal Muscular Atrophy (SMA) is a genetic disease that was once thought to be untreatable but now has multiple treatment options. Many of these options include gene replacement therapy, which involves altering the genes in the body’s cells to treat or stop the specific disease. Within the SMA space, Zolgensma™ is the first gene therapy medication to be introduced. Aside from Zolgensma™, there are currently two other FDA-approved therapies: Spinraza™, and Evrysdi™.

  • December 2016: Spinraza™ was the first approved treatment
  • May 2019: Zolgensma™ approved
  • August 2020: Evrysdi™ approved.

In addition, according to CureSMA, there are approximately 20 other medications in development, including several in clinical trials. At Shield’s, we have a dedicated team of individuals that tracks and monitors the drug pipeline for new drugs from the clinical trial stages all the way through the approval process.

“ To help ensure our care model can be accessed by as many patients as possible, Shields is building out our rare disease programs and monitoring these medications more than ever. Of the 7,000 rare diseases identified, only 5 percent currently have a treatment option. However, 33 percent of medications in the pipeline are considered orphan drugs to treat rare diseases. At Shields, we are actively monitoring the drug pipeline as well as clinical trial sites to help ensure the appropriate access for each site.” – Ben May, PharmD, Shields Health Soltuions

As new drugs enter the market this team works to gain access on behalf of health system partners while also collaborating with other teams throughout the organization to build clinical programs and care models. It is a team effort at Shields that starts well before new drugs are even on the market.

Improving lives and elevating performance are at the heart of everything we do. We are so proud of the work our teams do within the rare disease space as well as the impact their efforts have on our partner’s patients every day.


1.)    Spinraza. Food and Drug Administration Web Site. Accessed on August 10, 2021.

2.)    Zolgensma. Food and Drug Administration Web Site. . Accessed on August 10, 2021.

3.)    Evrysdi. Food and Drug Administration Web Site. . Accessed on August 10, 2021.